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This is our lovely, 3 year old little girl, Lysbeth. She is, and always will be our beautiful, precious daughter. As her parents, we knew that Lysbeth wasn’t developing the way she should be. On 1st May 2018, after almost 2 years of hoping and praying that things weren’t as bad as they seemed, Lybseth was unfortunately diagnosed with Rett Syndrome. I wish there was something nice that I could tell you about Rett Syndrome – but there is not! It is a cruel neurological disorder effecting every aspect of life. Rett Syndrome is a rare, non-hereditarydisorder caused by a random genetic mutation. I hate Rett Syndrome because it means that our daughter will never be able to talk to us and we will never hear her voice or what she has to say. We will never see her run, skip or jump with her 3 sisters. We will never see her get a job, leave home, get married or have children of her own. We will never get to see her do even the most basic of things that most of us take for granted.  When we received the news, we were absolutely crushed and we still are. The future for Lysbeth, for us, for our family has changed hugely. However, we will not, and cannot stay sad forever. What we do have is love and family and friends – the priceless gifts that make our lives worth while, invisibly upholding us.

It’s too sad and painful to go into detail about all symptoms associated with Rett Syndrome so I want to explain what has helped Lysbeth and the positive things going on Lysbeth’s life.  

Every week Lysbeth undertakes Physiotherapy and Speech and language therapy at Heel and Toe, a children’s charity supporting  children with disabilities. Since starting sessions at Heel and Toe in September 2017, Lysbeth has made progress we thought she might never be able to. Although we were told she may never walk, she has started to take her own steps with the aid of a walking frame and support to keep her upright. She has also started to use eye gaze to communicate understanding and we hope that this will lead onto Lysbeth being able to communicate her basic needs and preferences.  She works so incredible hard in these sessions, often shaking with the strain and falling asleep straight after her therapies from pure exhaustion. Although she finds her sessions hard, she never gives up and shows much determination.  We couldn’t be more proud of her!

We are hoping to raise as much money as possible in order to continue to support Lysbeth with her session at Heel and Toe. Without these sessions. Lysbeth would never have made the progress made so far. The sessions are vital for so many reasons; including minimising the risk of scoliosis, providing Lysbeth with a way to communicate basic needs, for her emotional health and well being and for her skeletal and muscle health,  to name a few. 

We would be very grateful for any donations as they will make a direct impact on the comfort and fulfilment of Lysbeths life. If you are unable to donate, please consider sharing our story so that we can show everyone what a wonderful, brave, little warrior Lysbeth is.  

We love our Lysbeth. She has and she will continue to make us better people, to make us stronger people, to make us people we never thought we could be.